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My Experience on Evenity for Treating Osteoporosis
Thought I would share for those considering or on Evenity for osteoporosis:
Afer much research and discussions with my GP and Cardiologist, I have decided to start my treatment with Evenity injections. As with all drugs, there are many side effects. My biggest concerns were stroke and heart attack. However, considering that I do no have any history for either, for me personally, the benefits outweigh the risks. As my GP said to me, "if everyone only thought about the side effects of the drugs, no one would be taking them".
I had my first injections (subcutaneously in the back of each arm) on June 30th. The nurse that administered the injections discussed the drug in depth, along with all the possibilities that may occur. She also mentioned that for all the patients that she has seen, none has had any side effects.
The injections are once a month for only one year, so I'm hoping that this works well for me and I can improve my bone density, especially in my spine, where I need it the most.
My endocronologist has also prescribed Hydrochlorthiazide for my idiopathic hypocalcemia. I have an appointment with an allergist this month to confirm whether I still have an allergy to sulfa drugs, since this drug contains sulfa. Apart from this I take D3 orally and try to obtain additional calcium through foods not supplements. Trying to walk 3-4 times a week and will begin with a few weight bearing exercises.
My journey began September, 2019 when I was diagnosed with severe osteoporosis. After waiting to see three doctors, receiving three denials from insurance company for Evenity, which took several months, I am hopefully on my way for a favorful outcome.
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Thank you for your advice. I will check with my endocrinologist also. Life span with regard to Prolia, as in, other threats like cancer may not matter if we aren't going to live much longer?
@lashu not because of other health issues. Taking Prolia when older might make sense because we might not need to deal with going off of it. because our lifespan may not exceed time on it.
My endocrinologist commented that he might start prescribing it when he is retiring. He was joking because he does not want to deal with getting people off Prolia!
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3 ReactionsThat is funny. A little levity never hurt (I hope: my primary physician can also be debonair a bit more than at first I could accept. Now, however, given the complexity of these medications and the need, apparently, to just toss the dice and dive in (mixed metaphors notwithstanding) at some point....a little humor is all right.
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2 ReactionsMy endocrinologist said the symptoms I experienced were not experienced by anyone in the clinical trials. That was not true. Heart palpitations, which got worse after the second shot and really scary bad after the third. I also had insomnia and mild swelling of the face. My fourth shot was scheduled for the 12th of July. I didn't have it and am gradually , very gradually, getting back to normal. I will read the book you recommended by R. Keith McCormick and find another endocrinologist.
Hmm.... I never thought about the terrible cold I had after my second shot. I thought it was just a terrible cold, but it did seem strange that no one else in the family had as much as a sniffle. I even took a COVID test which was negative. The "cold" side effect was something I must have missed in the reading material.
Thiscis what my oncologist's office provided to me ehen I asked about Evrnity.
Adverse Reactions
>10%:
Neuromuscular & skeletal: Arthralgia (8% to 13%)
1% to 10%:
Cardiovascular: Cardiac disorder (2%), peripheral edema (2%)
Central nervous system: Headache (5% to 7%), insomnia (2%), paresthesia (1%)
Dermatologic: Skin rash (1%)
Hypersensitivity: Hypersensitivity reaction (7%)
Local: Injection site reaction (5%), pain at injection site (2%), erythema at injection site (1%)
Neuromuscular & skeletal: Muscle spasm (3% to 5%), asthenia (3%), neck pain (2%)
Yes - Prolia is supose to maintain the improvement you have made taking Evenity. I’m not crazy about beimg on it for the rest of my life though. Will check with my doctor on alternatives.
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2 ReactionsMy Rheumatologist fought hard too get me on Forteo but my cost would be $30.000 a year. I even contacted Lily for financial support & was denied. So after waiting two years, my dexa scan numbers weren’t favorable so she put me on Evenity. It came down too damned if I did, & damned if I don’t! But both my Rheumatologist & Cardiologist gave me their blessing too start Evenity. Thanks so much for reaching out! Means a lot!
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3 ReactionsSorry to hear this. I haven't started yet, however both my docs said none of their Evenity patients had adverse reactions. I am starting to doubt how valid this is after reading about all the symptoms reported. Makes me think I should hold off until after my summer travels. I would hate to be out of the country and experiencing bad side effects.
On another note, have your t scores improved?
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1 ReactionI am glad you stopped Evenity also. I am still dealing with the palpitations which are scary. I feel that some MD's only want their patients on Evenity for the money they get paid from the Insurance company for the monthly injection ( they bill for the nurse giving the injection). I hope I feel better soon, I am glad you will read the book I recommended, it really is an eye opener for people like us. It has so much information that is needed to educate us. I am still searching for an Endocrinologist or possibly another MD ( Functional MD) to listen to my concerns and guide me correctly.